Just having a moan!

Having a down day and just feeling very unlucky! Soo fed up that this condition controls every aspect of my life. I am a third year student nurse on my final placement (which I am actually really enjoying) and have had to phone in sick today. I wouldn't mind but I have had two weeks off for over Christmas and it's typical that I come on and am in agony the night before I am due to start back.

My consultant doesn't seem interested in me now I have refused the Prostap/Zoladex injections. Also feel like he thinks I'm either lying or exaggerating when I tell him my symptoms!

Just wish it would all go away! Sorry for moaning but just needed to have a rant, to people that understand how frustrating this condition can be!

12 Replies

  • Hi Hol

    I replied to your previous message. Have you done anything about getting a referral to a specialist centre? You have good options in Manchester. The type of pain you previously described suggests deep endo that would not usually be visible at a lap in general gynae.

  • Hi Lindle,

    Thanks for replying, no because when I mentioned my symptoms to my current consultant, he said he finds it hard to belive that the rectal pain will be endo related because I only had a lap 12 months ago. Therefore it wouldn't have grown back enough to be causing that pain and also a change in bowel habits. He has just asked my GP to refer me to a gastroenterologist?

    Holl xxx

  • Hi Holl

    As far as I can tell most general gynaecologists don't even seem to know about deep rectovagoinal endo. They are looking for a different form at a lap called peritoneal endo and even then a lot of general gynaecolgists will miss that as it has so many different appearances. Added to that you are likely to have had what they did find ablated which just treats the surface. Have you had a rectovaginal exam - fingers up bum and vagina at the same time and/or an MRI? Without those no one can say that you don't have deep endo causing your pain. Referral to a gastroenterologist is the usual next step when it is most usual to find nothing wrong and be given a diagnosis of IBS whilst deep unseen disease progresses. You now need to follow through in writing saying you wish to exercise your right to a second opinion under General Medical Practice and to see an actual specialist in endo of your choice under NHS Choices. I have all the links in my post on how to find a specialist but if you want help with a letter can you private message me. x

  • Sorry for the long reply I have been really busy with placement. I haven't had the rectovaginal exam, but he did offer an MRI but only after I had been to see the gastroenterologist. I have been on your links and think my consultant is on the list of specialist? Therefore im presuming he has checked everything? This makes me feel a bit low because if he has covered everything then why is my pain so bad?

    Thanks again for replying

    Hol xx

  • Holly I have deep recto-vaginal endometriosis which came back after just 12 months. It *is* possible. You need a different specialist.

  • Thank you for replying Lauravarn!

    Sorry to hear that you have deep rectovaginal endo. I think that ill go and see the gastro spealist and if my pain doesn't not improve then ill ask to see him sooner. But due to having knock backs with previous specialists, and them making you feel like your making it up, I'm worried about mentioning the idea of deep rectovaginal endo incase he thinks that I'm being a hypochondriac or something. If that makes sense haha.

    Hol xxx

  • Sorry your feeling so low, we all have those days, x just wanted to say you're not alone and sending you a virtual hug ((((😗))))))

    Ps I too don't fancy those injections, heard the side effects aren't great and think other routes should be tried 1st especially if you are young xxx

    I too have been made to feel like a hypercondriact by my gp and previous consultants, they don't live with it xx

  • Thank you for your kind words Kimmie! I love this site because its nice to know your not alone! Even though it's a shame others are going through what you are and sometimes even worse!

    Yeah being 23 I don't want to go through the side effects of the injection either.

    It's really confidence knocking when you want to mention something that has been bothering you but, you have been doubted in the past. I don't think GPs and Specialists take it into consideration.

    Hol xxx

  • Think we all have those down days where we wish just someone would make us "normal"

    U need to sit in that doctors chair and refuse to move until they do something for you.

    I have had constant bleeding for 4 years from my endo and I was told by docs that they have tried everything (I had the zoladex) and there's nothing more they can do for me.

    sooooooooo I sat on my chair and told him I'm 29 years old and bled everyday for 4 years and I'm not bleeding everyday for the nxt 20 years so I will sit here until u do something.

    Soon enough I was referred to an endo specialist hospital and was given an MRI which showed the endo had come back and was given my 3rd laparoscopy.

    I know your feeling of thinking they don't care (and let's be frank they don't cause they don't know the pain) but don't live with it. STAND UP FOR YOUR SELF and don't let them fob u off.

    If you don't mind me asking do u take the pill to try and control your periods??

    It might be worth trying the progesterone only pill (mini pill) so u don't get a period.

  • Hi L96kp13,

    Thank you for your reply! Exactly I said to my fiancé last night "it is so hard to have a life and live with this condition" his reply was "I wouldn't call working having a life... do you just mean living" and I felt that explained my point exactly, going to work should be a "normal" activity not one that takes every ounce of energy both mental and physical, that you have!

    Gosh 4 years is a long time! Hope you are feeling better now? I know I need to put my foot down, I'm getting my mum to come with me to my next appointments (yes I am 23 and still need my mum to stick up for me haha).

    I don't mind at all, I am on my 3rd month of Microgynon the combined pill atm. I can't take the packets back to back, because when I first started taking the pill to control my symptoms 6 years ago this was advised and it caused continous bleeding. My consultant did say if there is no improvement then to try yasmin again but after 3 months.

    (Sorry for the essay)

    Hol xxx

  • We certainly know how you feel here! 😉 Endo does take over your life and you just hope that the good days outweigh the bad. Can I ask why you refused prostap injection? I had my first one this month and due to have 2 more before starting IVF. Xx

  • Hi angelpie12,

    Also thank you for taking the time to reply. Everyone's kind words really do help!

    I didn't want the injections because my consultant seemed very persistent on my having them, but didn't really go into the side effects. Every time I would go and see him he would say I'll write to your GP with the instructions of the injection and they will sort it out for you. Even after me saying I wasn't too keen. It made me feel like he had shares in it or something haha.

    Also I'm 23 and most of my friends are having babies atm and the thought of me going through artifical menopause while 70% of my friends are pregnant or have little uns, makes me feel really depressed.

    Good luck with your IVF by the way!

    Holl xxx

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